Down Syndrome Advocates Increase Efforts To Educate Medical Groups, Pregnant Women About Condition

Main Category: Pediatrics / Children's Health
Also Included In: Pregnancy / Obstetrics;  Medical Students / Training
Article Date: 31 Jan 2008 - 5:00 PDT

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Several Down syndrome advocacy groups have increased efforts to educate medical groups, and pregnant women and their partners about the condition since the American College of Obstetricians and Gynecologists recommended last year that all pregnant women be offered a prenatal test for the condition, the AP/Belleville News-Democrat reports (Hollingsworth, AP/Belleville News-Democrat, 1/29). The January 2007 issue of ACOG's journal, Obstetrics & Gynecology, included new guidelines recommending screening to all pregnant women in their first trimester, regardless of age. Each year, about 5,000 infants in the U.S. are born with Down syndrome, one of the most common major chromosomal abnormalities (Daily Women's Health Policy Report, 1/2).

According to the AP/News-Democrat, several Down syndrome advocacy groups believe that many physicians do not provide patients with sufficient information when giving a prenatal diagnosis of Down syndrome. A 2005 study conducted by Harvard University of parents of children with the condition found that many physicians did not provide up-to-date information or referrals to support groups when giving a prenatal Down syndrome diagnosis. ACOG recommendations say it might be helpful to refer women to geneticists, counselors, clergy and Down syndrome advocacy groups, such as the National Down Syndrome Congress.

NDSC recently began a public awareness campaign aimed at the general public and medical professionals called "More Alike Than Different." The campaign aims to show that people with Down syndrome are more similar to than different from people without the condition. The group has exhibited at two medical conferences in an effort to educate health professionals. Sue Joe, a resource specialist at NDSC, said that if people understand the condition, a Down syndrome diagnosis "won't be such a devastating piece of news."

Sens. Sam Brownback (R-Kan.) and Edward Kennedy (D-Mass.) in November 2007 introduced a bill (S 1810) that would require physicians to provide comprehensive medical information when giving diagnosis for Down syndrome or other prenatally or postnatally diagnosed conditions (AP/Belleville News-Democrat, 1/29). The bill intends to increase access to information about life expectancy, referrals to support groups and options for caring for children with the conditions (Daily Women's Health Policy Report, 11/30/07).

Some Down Syndrome advocates are concerned about the high abortion rate among pregnant women who are told their fetus has the condition and feel that parents are not receiving adequate information about the condition. Although no national data are available, the abortion rate of fetuses with the condition was found to be 59% in one California study and 92% in an English study. ACOG has recommended that physicians discuss the option of abortion with pregnant women whose fetuses are diagnosed with a genetic condition (AP/Belleville News-Democrat, 1/30).

Reprinted with kind permission from http://www.nationalpartnership.org. You can view the entire Daily Women's Health Policy Report, search the archives, or sign up for email delivery here. The Daily Women's Health Policy Report is a free service of the National Partnership for Women & Families, published by The Advisory Board Company.

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